As It Happens

Woman who can smell Parkinson's disease helps scientists develop early detection test

Joy Milne kept telling her late husband that he smelled musty. Six years later he was diagnosed with Parkinson's disease.
Joy Milne's husband, right, passed away from Parkinson's in June. Before he was diagnosed with the disease, Milne noticed that he was giving off a "musky" odour. (Parkinson's UK in Scotland/Facebook)

DecMilne below: 

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Researchers at Manchester University are close to creating the first diagnostic test for Parkinson's disease. A large part of their success is due to Joy Milne's sense of smell.  

The retired nurse first started to detect the odour on her late husband six years before he was even diagnosed. He died two years ago from the disease. 

Now, with Milne's help, a team of researchers at the Manchester Institute of Biotechnology have discovered 10 molecules linked to the condition. Their identification could lead to the first diagnostic test.

Milne spoke with As It Happens host Carol Off about her skill. Here is part of that conversation. 

Joy, what does Parkinson's smell like?

It's a very heavy, oily, musky smell. It's not like the musk of a plant  — it is definitely an animal musk.

And when was the first time you detected this odour?

My husband was about 32, 33 and I started saying to him, "You're smelling. You're not showering enough." But that wasn't the case. And in the end he became quite annoyed with me and I just had to be quiet.  

When did you finally start to think this smell, this musky odour that you detected, was somehow related to his disease?

We went to a Parkinson's meeting. We got home and I sat him down ... and I said to him, "Those other people smelled the same as you in that room. And he just looked at me and said, "What are you talking about?" And I said, "The other people who had Parkinson's smelled exactly the same as you.   

And when did doctors, scientists, start to discover that you had this ability? They must have thought you were crazy when you told them that you could detect this odour.   

With me being a nurse, and him being a doctor, we decided not to just blurt it out. We decided to look at the various meetings that were going to be in Scotland. And we looked up Tilo Kunath and we thought, "Yes, this is the person."

And I stood up after his lecture and I said, "Why are we not using the smell of Parkinson's to diagnose it early?" And there was total silence. 

Tilo Kunath is the Parkinson's UK Senior Research Fellow. He was one of the first scientists to learn about Joy Milne's case. (Tilo Kunath)

How did they test your ability?

Well [Tilo Kunath] decided it would be T-shirts to start off with. And so we cut the T-shirts up and I said, "No no it's not sweat. It's around the neck and forehead and in the hair."

I decided to do them in five different levels because I could, by then, differentiate the different levels within the illness. But there was one T-shirt who I insisted the man had Parkinson's and [Tilo Kunath] said, "No, no he's in the control group." 

And what became of that?

About five, six months later Bill phoned up and said, "I've got Parkinson's. So what did she say in the testing?" And [Tilo Kunath] realized I had been right.

Do you think that they would have been able to get this far, had it not been for your understanding through smell?

No, I don't. We had a lot of mail from people from all over the world. And there was a nurse who had told the doctors that he could smell it. He was totally ignored. But the most stunning one, is a doctor David Creston  — a cardiologist. He described what I am smelling in a paper, and it was ignored. That was in 1927.

Perdita Barran (right) from the Manchester Institute of Biotechnology worked with Joy Milne (left) to develop a way to detect Parkinson's disease using Milne's ability. (University of Manchester)

This identity of the molecules that has come with your extraordinary sense, what does that actually mean for people with Parkinson's disease. What does that mean  for detection of this disease?

[Perdita Barren] is hoping that she will be able to manufacture a simple swab that will go into general practice and she will also be able to design and build a small spectrometer that could be in clinics and hospitals.  

Your late husband, Les. Did he know the work you were doing with Parkinson's research?  

He did. He was very, very keen on it. He made me promise  — he knew he was dying  — he made me promise that I would do it. He said, "Don't ... let them defeat you. Keep going."

This interview has been edited for length and clarity. For more on this story, listen to our full interview with Joy Milne. 


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